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Schizophrenia

A NAMI Voice: The High Cost of Stigma and Discrimination in the Workplace

Four years ago, I had a job that I loved, surveying consumer satisfaction in the local mental health care system. A requirement for the job was that the position be filled by a consumer or family member. I am both, and I identified myself as suffering from bipolar disorder, but I noted that I received regular care and had been stable and employed for all my adult life.

I had been successful in my job. Unfortunately, after I disagreed publicly with a regional mental health official about how satisfaction survey contracts were awarded everything began to unravel. The day following that public meeting, my boss called me into her office and claimed that I had embarrassed her and the organization. Furthermore, she asserted that my public comment was a symptom of my illness.

It was not.

When my boss and two county officials confronted me a week later I learned that they had discussed my illness amongst themselves and with others. I soon discovered that my peers had discussed my illness in front of their children and friends. My daughters heard about the "so called symptoms" at their local high school. They were 13 and 17 years old. "Was it true that their mother was crazy and had been fired?" they asked me.

Doors to employment that had been open for me closed quickly. Employers with whom I had good relationships wouldn't return my calls. My letters and resumes were ignored.

Where to turn? I knew of the employment services in my county. I had worked with this agency as a professional in the past. Many of my peers received services in the "workshop environment" provided by the employment agency. They were sent on interviews for jobs bussing tables and fast food restaurant jobs.

I went to the federal vocational program in our area. They tested all of my abilities and determined that I had an above average IQ and superior intelligence. Thus I would not qualify for retraining. However, they offered to place me in an office to answer phones on a part-time basis. Although this outcome would improve their performance statistics, it would disqualify me for SSDI, which I increasingly believed was my only choice.

Stigma and discrimination have cost me my livelihood, self-esteem and the future I had before I self-disclosed my illness. I hadn't changed, but what the world saw had: after knowing about my illness they saw someone who is unemployable, undependable and possibly dangerous; a person who cannot be trusted.

Excerpt of comments presented by Donna, NAMI member and consumer advocate, at the NAMI national convention, Minneapolis, MN, June 29, 2003.

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